NMom

Thanks S&S for your response. I've read the same thing about steriods and Lyme which is why I'm so concerned...and I don't understand why our PANDAS doc is prescribing them unless she too doesn't understand how they might affect someone with Lyme??? My son is fully functional right now - in school, etc. but he struggles daily to keep the OCD from taking over. I hate that and want to help him but am so afraid to do something that will send him on another downward spiral. I'd be very interested to hear from anyone that has tested positive for Lyme and used steriods - what are we trying to figure out?

Quick background: My son (7) was diagnosed with PANDAS in May 2010. He had a confirmed strep culture just before the onset of symptoms. He responded very well to antibiotics and we were told 'he'll never have another episode as bad as that again' by our PANDAS doctor (who I'm quickly learning does not have any sense about what is said in front of my child!!) Fast forward to June 2011 and here we go again. He's been on antibiotics all year and had a great school year but things started ramping up around May again and by the first week of June we were in a downward spiral (had repeated strep exposure). Saw the same PANDAS dr. who asked my son (my seven year old son!) if he was ready to go to the hospital and get rid of this for good. So we prepared to do PEX but at the last minute I asked if we should test for Lyme and co-infections or try steriods. I was told that steriods wouldn't be helpful now since we were coming out of the exacerbation. But the other tests were ordered and I got the call today. As our PANDAS doctor put it..'he's VERY positive for a recent LYME infection'. Igenix said the blood was too old to test for co-infections so who knows what else would have been positive. Basically he tested IgM positive for bands 41, 58, 89-93. So PANDAS doc has now decided to do a 30-day steriod burst. In my shock I neglected to ask enough questions to understand why we are trying steriods now. All I got from the doctor was that we need to see if there is an immune response..but why? If he gets better on steriods, does that indicate PANDAS? If he gets worse then...does that indicate Lyme? We already know there was a strep exposure before both episodes. And everything I read about the Lyme testing indicates that it is cross reactive with other infections and not entirely accurate. A very wise friend on this forum told me to really consider what I would do with a positive Lyme result because it can take you down a rabbit hole. At the time I thought I'd just put it in my back pocket if it came back positive. I really believe this is strep related. But it know threatens our ability to do PEX. Maybe that's ok. I know a lot of people say they've done PEX and results didn't last because of undiagnosed Lyme. But if you'd know about the Lyme prior to doing PEX...what would you do then?

Thank you! I don't like surprises...like to plan so I want to know EVERYTHING about PEX before we go through it. Praying constantly that this is an answer for us.

We are doing the Lyme testing right now with IGENIX .. not sure if the order included testing for bartonella. I want to do all the testing for coinfections as that seems to be what sets a lot of people back after PEX - and this might be our only shot at PEX. Thanks for the input. I'm terrified of putting our son through PEX but hoping that it's all worth it in the end.

Thanks LLM! Our son is on abx now and will continue. We haven't removed tonsils though - dr. said she doesn't think we need to as he has done very well all year until this last exposure to what she thinks was a resistant form of strep. Apologies if you've already replied to one of my other posts but if you don't mind sharing I'd love to know how your son is doing since PEX. Has he been exposed and did it all come back or does PEX give you a chance to 'undo' some things permanently?

We are trying to schedule PEX for end of September and have gotten conflicting information from the doctor and her office manager on what our son can do after PEX. I know it weakens the immune system a bit but am looking for some 'real world' experience from others who've been through this. 1) How much school should we expect to miss? We were originally told only a couple of days after the procedure but am now being told it could be as much as two months. That obviously makes a huge difference in how I discuss this with my son's school! 2) We'll have to travel to the hospital that does the procedure...should we plan to drive (2 day drive) to avoid airplanes? Separate random question....When they strip off the antibodies during PEX...do they also strip all antibodies created by the vaccines he received as a baby? Is he now essentially 'unvaccinated'?

Thank you! That's what I needed to hear...hope!

We are considering PEX for our ds. His main symptom at this point is the obsessional part of OCD. He's constantly worried that he's done something inappropriate or hurt someone's feelings or lied, etc, His feelings .. especially of guilt.. are totally out of proportion to actual events. At one time he had a whole series of compulsions as well...making things even, counting, etc....but all that stopped as did most of his tics. Now it's just this obsessive over thinking and extreme feelings of guilt that are robbing him of some of the things he used to love. But most pex stories I've heard were successful for tics ...anyone seen pex help with the emotional/mental obsessions?

Thanks to all of you for weighing in here. TMom - you asked what I meant when I said my son was coming out of an episode. This exacerbation started right after school ended (within weeks of the same time he started an episode last summer) and peaked around early July. I finally clued into a few things including the fact that I do not have any PANDAS support in Houston and had let myself get talked out of PANDAS and into trying other things that were not helping. When I finally incrased (almost double) his antibiotics and stopped all the other stuff he started improving. He's not near baseline at all but vastly improved from early July. However it does seem like the OCD is now becoming chronic and while it's not obvious to others, he is tormented internally all the time. He has told me repeatedly after the visit with Dr. Latimer that he wants to go to the hospital and is ready to have shots, blood work, etc. ... whatever it takes to get rid of the OCD. Big words from a 7-year old. Dr. L feels like the sooner we treat the better chance we have of 'getting rid of this' (her words). I'm sure there are some people who have been cured permanently through IVIG or PEX but I can't assume that will be the case here. So is it worth putting him through a painful, risky procedure in the hopes of getting relief...even if it's temporary? He is fully functional but will he continue to be??? These are all questions I've been asking. We've never tried steriods or had his tonsils removed and I asked specifically about those things and she said no to both. Based on the feedback I've gotten from other Dr. L patients...this seems to be departure from her normal course of treatment. Not sure why but certainly gives me a lot to think about.

Thanks for responding! This is a hugely difficult decision and I so appreciate the feedback. I am absolutely convinced that if we do PEX - it will be with Dr. L at Georgetown. We are trying to determine right now whether to do IVIG, PEX or just stay on antibiotics....tough choices! My son is fully functional but definitely still struggling a lot mentally. He told Dr. L and then reiterated to me again this morning that he wants to go to the hospital and do whatever it takes to make this all stop. But it's never that simple, is it? Does anyone just do PEX or IVIG and it all just stops? I hate to put him through something so traumatizing if it's not going to be a significant improvement and he's already functioning..I hate this.

We are coming out of our second major exacerbation and just saw Dr. Latimer yesterday. I was completely expecting her to say we needed to increase his antibiotics or change to another drug...not sure why but was totally blindsided when she said we need to pursue either IVIG or PEX. My son is completely functional but definitely struggling internally with OCD and tics. He takes Augmentin daily and I increase his dosage when he's been exposed or feels the OCD growing. He had a great school year - a couple of minor episodes that stopped quickly - and never interfered wiht his life. This summer we believe he was exposed repeatedly to a resistant strain of strep which kicked off a fairly major episode. Strangely enough this second exacerbation started almost exactly 1 year after our first PANDAS episode. Both started right as school ended so I initially thought this might be due to stress as we wrapped up school and entered into the unstructured summer months. So I suppose I was hoping we were going to manage the next few years on antibiotics and he'd grow out of it and we'd move on...naive I know. Anyway, here we are now..facing this decision and I have no idea whether IVIG or PEX is the right choice...or whether we should do either at this point given that he's fully functional and continued to function through both his previous episodes. Dr. L did not give me a recommendation at all - she did not indicate whether we'd do one IVIG or multiple(believe she generally does several though, 4-6 weeks apart) or what happens if PEX doesn't work. I was a bit in shock while in her office and asked all the questions on the list I carefully prepared before the appt...none of which covered how she does IVIG or whether she would recommend PEX over IVIG. I'm so sad that we are at this point and I know that many of you have probably felt this same way. I'd really like to hear from anyone who faced the same choice and why you'd choose one over the other. I'm also curious whether there is anyone who chose not to do either and pursue other treatments.

Sorry -meant PowPow - didn't get your PM.

Grace - I didn't get your PM...can you try again?

Grace, We are also patients of dr L. And live just north of Houston...and are considering pex. Did u get any feedback on your question?

I share your concern. My son is fully functional but still struggles daily with the tics and OCD thoughts. He's on abx and has been for a year and we are just coming out of our second major exacerbation...so I'm wondering now about IVIG as well. I have an appt with Dr. L tomorrow and am going to ask that question...will be happy to pass along her thoughts on the subject. All of this is so scary and stressful. All I want is for my son to ultimately be healthy and not haunted by all this OCD crap!

Jen...we are patients of dr. L as well and have had similar issues reaching her. I've never gotten a phone call returned. Sometimes she will answer an email but I haven't had much luck. We had an exacerbation this summer and I was only able to get an answer to one email. Keep it short and to the point and you have a better chance, We actually have an appt to see her tomorrow and I will ask her how prefers to be reached. Sorry I'm not more help!

Thanks again to all of you that respond so quickly! Your input really helps me focus on a path forward. My son did respond very well to antibiotics last year and has been on a maintenance dose since then. I increased his dosage when this all started but didn't see much improvement then so we went back to the maintenance dose ( concerned about how much his gut can take). I just found out that one of his martial arts instructors is just now recovering from his second round of strep which means that the my son may have been exposed around the time this all started - hard to tell but worth noting. I agree with many of you about following a PANDAS strategy for an exacerbation - we got a bit off track. It's hard to remember sometimes that even the best doctors do not understand PANDAS. I reduced the SSRI yesterday and stopped it altogether today. I also increased the antibiotics again starting yesterday. The psychologist we are working with identified that many of the urges and obsessions he's struggling with are tics (Tourette's) vs OCD - which explains why the ERP therapy we've been doing wasn't working on some things. He responds very, very well to ERP therapy. So we started practicing relaxation techniques last night when the obsessions start taking over. I'm not ready to celebrate yet but I can tell that he's a different kid today. He's more relaxed and has had very few issues today. I'm going to watch over the next week or so and then start the steroid burst if we don't see continued improvement. We have not done testing for additional infections except for some intial Lyme testing through our pediatrician. I think that may be a next step though - I want to know exactly what we are fighing! On a personal note..thank you for the encouragement. It's hard to describe how bad I felt a few days ago watching my son suffer. Thank you for taking the time to reply.

Thanks for all your replies. My son started with 12.5 mg of Zoloft for one week and then we increased to 25 mg about 3 days ago. I went back to 12.5 mg today. I feel like I don't know him at all right now. He's not sleeping well...was always a pretty good sleeper. His mind is racing at night - he can't settle down and if he wakes up then he can't get back to sleep. He's talking about hurting or killing people or animals. I know these are common OCD obsessions and I've done CBT 'homework' around these things and am confident that he wouldn't act on them. I know that they probably come from frustration, anger and depression...but so hard to hear. The strange thing is that he's actually very functional. He can go play with friends, watch tv, go to camp, etc. but when he comes home he has to tell me all the obsessions he's had. I guess my biggest fear right now is that this is not PANDAS. Strange..I know. But if these are not PANDAS symptoms, have we been chasing the wrong thing all this time while he suffers? I cannot get the bipolar idea out of my head. He does seem a bit manic right now...his obsessions also seem to be sexual (as much as he knows about that right now which is very little) and he has so many symptoms of a manic episode...but these also seem to be OCD and PANDAS symptoms. I feel so lost right now.

Well here we are again. My son, 7, was diagnosed with PANDAS last summer and responded very well to antibiotics and CBT therapy for the OCD. The day after school ended the OCD ramped up again but this time in the form of obsessions that he just cannot stop. Some of the obsessions have gone but all seem to revolve around one or two key topics. We started him on Zoloft about 10 days ago on the advice of our pediatrician and the psychologist who helps us with CBT therapy. I'm trying to be objective but it seems to me that the day after he took the first pill he started having much more depressed thoughts (said he wished sometimes that he didn't exist) and more violent, agressive obsessions. THis is not my little boy. I feel like I don't even know this child. He told me tonight that he doesn't want me around. Actually said some very scary things. I'm at a loss- no idea if this is the zoloft talking or if I've been wrong about PANDAS this whole time. Our therapist brought up the possibility of bipolar which makes me feel totally hopeless. I just don't know where to turn next. We have an appt with Dr. Latimer in August but that seems like a lifetime away right now. Any advice would be appreciated.

You make a very good poitn about the different ways you've seen symptoms return. We are definitely not seeing a drastic overnight onset like last summer. This is very minor stuff and I immediately started panicking - but it has not been a sudden onset of major symptoms. Maybe that signals a smaller bump in the road. I do have a prescription for 30 days of steriods just in case. Right now I've just increased his antibiotic and we are watching...hate to use the steriods unless I really have to. Thank you for the feedback...information is key and you've helped a lot.

Yes- I found one of the other ladies when I started researching PANDAS and we started the group together with a wonderful nurse that does not have a PANDAS kid but has seen what PANDAS can do. It's usually just the three of us meeting now but it's still good to have some support locally.

Thank you! Your story sounds very similar and I realized while watching the video that you live in Frisco. I'm in The Woodlands, TX and my sister is in Frisco. I almost came to Frisco to look for a doctor but ended up going to Dr. L in DC. I had actually seen your news story before and think it's wonderful that you helped educate everyone who watched that newscast. It does give me hope to hear that others are having the same small blips that we seem to be having. My son is also well adjusted, happy and active - wish I could say the same for myself!! I'm trying...that's all we can do!

I find that so interesting that your son tells you he's always had to do things an even number of times. I've heard that as well but for most of this past fall he would act like I was nuts for asking if he was touching something evenly or jumping over a crack (big OCD symptom for him). Maybe it is like a dream for them and at age six/seven...they already have a very fluid sense of time. Thank you for the insight.

Your story sounds very similar to mine. My son had abrupt on-set tics and OCD following a strep infection. He too had strep too many times to count as a baby and toddler. I have emailed Dr. L. but I don't usually get any response. I like seeing her in person a lot and we will go back but I find it almost impossible to get to her at times like this when we really need her advice. I have called and emailed her office, cried to her assistant and begged for them to understand. This was mostly last summer after she failed to show up for a pre-arranged conference with our local pediatrician. I was told by her office manager that I needed to know that they were implementing new rules for PANDAS parents because they could not continue to deal with people like me calling and emailing so much. Not sure what to say to that! I so wish we had someone in Houston that believed and would treat this.

DCMom - I'm fairly certain this has been brought on by multiple exposures to strep at school. It's been everywhere the last few weeks. I'm not really even surprised...just sad. I'm curious about why and when you chose to do pex? Do you know what brought on the full relapse? I keep thinking we can't have a full relapse now that he's on antibiotics but maybe that's just wishful thinking.